Friday, April 29, 2011
A Special Community
The day I started this blog, was the first day I took a deep breath, somewhat a sigh of relief, or a sigh of acceptance more to speak, over Aiden's deafness. It was after spending days upon days reading many other's stories reassuring myself everything was going to be okay. It was the day I said to myself, "OK, here we go." I started this as a journal, not only for myself, but for others. I wanted to be true to myself and to anyone who followed my emotional and physical roller coaster, of what was to be Aiden's story, on our journey to help him hear and speak.
I open(ed) my heart, sharing my deepest thoughts, heartaches, simply.amazing moments, lessons learned, milestones reached; sharing each small step taken, each set back, each triumph, has all helped me release my feelings. It was (and still is) my best therapy. In the same sense, I wanted to reach out to other families who were going through the same thing (whether before me, with me, or after me) - I wanted to be a part of a community who knew what I was going through, but even more so, to give back to a community that helped me see the light and provided me the strength I needed to move on.
I hope(d) Aiden's story would provide someone a sense of relief, a sense of "it's ok to cry my eyes out and say this all sucks!", a sense of HOPE that their child (or grandchild or niece or nephew or friend) may hear and speak one day too.
I want(ed) to provide an avenue of lessons learned and resources, but more than anything I want(ed) to provide the truths of a journey that is not an easy one, not a quick one, yet a simply.amazing one with a lot of hard work and true dedication.
Every once in awhile I'll receive comments on my blog, comments on Aiden's You Tube videos, a Facebook message, or an email from a new parent/professional/relative. Sometimes the emails are asking specific questions, sometimes they're thanking me for sharing Aiden's story, other times they're introducing themselves and their journey; a lot of times they are filled with emotion and I wish I could just reach out and hug the person. Each one touches my heart. Each one means a lot and I can only hope that my words back provide some sense of relief and guidance. There is a whole community out there once you become a parent or relative or any acquaintance of a deaf child. A whole new community to take a hold of and never let go.
We provide each other support and hugs when another is down - whether it's someone just starting the journey or it's three years into the journey and it's just one of those "I know my child's deaf and it still sucks" kinda days; and we provide each other high fives and more hugs when a child meets a milestone; we share tears in both happy, sad, and angry moments; we provide each other ideas when we feel like we've hit a brick wall. We watch each other's children grow up. and most of the time, we've never even met, but friendships are made, relationships are built ... ones that I truly cherish and know will last a lifetime.
we provide each other our arms of acceptance that, "I know exactly what you're going through and I will always be here for you," that not everyone looking into our world truly understands.
This community is beyond amazing.
I received a message that touched my heart on Facebook a little while back. This amazing person is from Italy and had been following Aiden's journey. As I read her message to my husband and mother-in-law, I was moved to tears. Here's a little piece of it.
"... my nephew was diagnosed only last march (he was 18 months old ) with profound hearing loss in both ears. He was born deaf like Aiden. Six months of hearing aids followed with practically no results and then last October he received Cochlear implant in his right ears . He has been hearing for 5 months by now and we have made good progress: he turns when we call his name and he's starting to say something ( vowels sounds, “pa” “ma”) He can hear now and that really is amazing and a miracle but sometimes it is so hard. ... I am so worried about him ... I would like to be able to find listening activities that may interest him and help him to speak more, I would like to be able to do much more to help him and his parents in this journey toward sounds and some days progress seems so slow ... then I read Aiden's blog and you can't imagine how this help, how encouraging it is to read about your journey and Aiden progress and success and well I really would like to thank you so much for sharing all this ....
I posted Aiden's video on my facebook homepage since it is so encouraging and I wanted my brother and sister in law ,and everyone else who don't know anything about being deaf, to see it and what amazing miracles can happen with a lot of hard work. You have a great family, Aiden is a lovely fantastic boy and you are a great mom and I really want to say thank you thank you thank you :)"
My eyes leak whenever I read this. One, it takes me right back to the beginning days, but even more so, this is a woman who has so much love for her nephew and has taken the time to research, to understand, to LEARN, to reach out in this vast support community. She is his aunt (his AUNT!) who has become one of this little boy's biggest advocates! I don't know this family, but I know this little boy is one lucky child to have an aunt who loves him so much and who will stop at nothing to help him hear and speak. HOW AMAZING IS THAT?!? and that's why my eyes leak.
and that's also why I love being a part of this community and being able to give back through our story.
Here's another message I just received this morning on Aiden's You Tube page from the video I made for Aiden's first hearing birthday, From Silence to Sound.
"This is absolutely adorable! I have hearing aids and have had them since kindergarten, and I've always felt different from everyone else. Until, of course I got to know my aunt who is also hearing impaired. But, even still, that feeling still remains, just at a slighter level. This little boy has given me an inspiration though. He has showed me that it's okay to be different, because that's what make you, you. Thank you so much for this video! :)"
and this is why I write, why I share Aiden's story through words and video. Not only to be a part of an AMAZING support group and for my own therapeutic benefits, but even more to see how his story is giving back, ENCOURAGING, providing HOPE and INSPIRATION, just as so many others continue to encourage and inspire and provide hope and guidance to me.
and for all of you, I am thankful.